extreme celiac & fructose intolerance

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smuff
New Member


Date Joined Nov 2017
Total Posts : 8
   Posted 11/11/2017 9:56 AM (GMT -7)   
My daughter has extreme issues with fructose and gluten. We have literally almost lost her twice, due to severe contaminations. She's now living on plain grilled chicken, plain white rice and plain grilled pork as a cleansing diet, and is afraid to add anything else. She was first diagnosed celiac 20 years ago and fructose intolerance 10 years ago. I'm very concerned for her health, obviously. Is there anyone who has dealt with this in its extreme form? Are there any specialists in the general Oregon area that might be able to help? Just plain HELP! I can't stand watching her diet get so restricted and her go through contaminations. She gives labels a closer scrutinizing than the CIA or FBI would!

Pirouette
Veteran Member


Date Joined Mar 2014
Total Posts : 6046
   Posted 11/11/2017 11:04 AM (GMT -7)   
Hi smuff -

I'm so sorry about your daughter's struggles. It's miserable.

I also learned that when problems become as severe as mine were and your daughters are, there are generally several things going on and more and more, the medical industry is realizing that these malfunctions often have an underlying microbial infection component to them.

Unfortunately, even the best gastroenterologists are unhelpful. If you can find one who is an integrative specialist or a D.O. you're better off. But it is a long process of discovery and trial-and-error troubleshooting. But many of us here have been through the process and can help fill in some gaps.

Disrupted mechanics
I've not seen someone describe "severe contaminations" maybe semantics and we're talking about the same things but I would describe mine as severe digestive malfunctions and food sensitivities to many foods that included gluten and fructose. I spent the better part of two years on a highly restrictive diet (no dairy, no grains, no sugars, no simple carbs, no processed foods) and a liquid diet because of severe leaky gut and severe pain when digesting foods. It took a couple more years but I finally put the pieces together. We talk a lot about healing GI on this forum.

I later learned that my Lyme & Co was disrupting digestion mechanics and I wasn't production digestive acids... so the food wasn't getting broken down before it was moving through my digestive tract.

Leaky gut
I also had significant GI damage - the mucosal lining of the digestive tract is not only THE barrier (other than our skin) between the outside world and the stuff we consume and the inside of our body. And if food and toxins and fecal matter aren't moving through the body effectively, these toxins can seep through the mocusal lining an enter the blood stream and travel throughout the body. And if this barrier is damaged, the body can't absorb nutrients and meds/supplements very well. And if this barrier is damaged, the lesser quality foods that we're now consuming as a society and the hyper-processed grains make it difficult to digest them properly.

Autoimmune response
And most significantly, if this barrier is damaged, and these food particles get into the blood stream, the immune system encounters them as a foreign object and starts reacting to them - causing significant autoimmune responses and this is the primary reason for celiacs and even more common and difficult to diagnose is gluten sensitivities.

Yeast/fungal overgrowth
The other complication is the development of yeast/fungal overgrowth that is more common than most people realize - especially if a person has GI trouble, has an imbalanced gut biome or has used antibiotics. Here is a lot more info on y/f overgrowth and how it can cause or exacerbate leaky gut:
Y/FO post in the "New to Lyme?" thread:
www.healingwell.com/community/default.aspx?f=30&m=1606610&g=3644275#m3644275

We might be able to target specific issues if you can list her other sx and describe the reactions she has to gluten and fructose.

Hope this is helpful -

-p
LYME FORUM MODERATOR

Chronic late-stage lyme—likely infected in '98; Clinically dx Mar'14 w/ Babs, Fry Labs+ Bart-like, CDC+ Bb. First treated 4-5 viruses, GI/immune. Herbal antimicrobials in May; IV port-started Rocephin in Nov; added vancomycin Mar'16;
DETOX: Pinella/Burbur/Parsley/Milk thistle/Burdock/Red root; Samento/Banderol/Enula; JK/Turmeric; BFM-1; antifung; many supps; cholestyramine

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 27139
   Posted 11/11/2017 12:32 PM (GMT -7)   
smuff said...
My daughter has extreme issues with fructose and gluten. We have literally almost lost her twice, due to severe contaminations. She's now living on plain grilled chicken, plain white rice and plain grilled pork as a cleansing diet, and is afraid to add anything else. She was first diagnosed celiac 20 years ago and fructose intolerance 10 years ago. I'm very concerned for her health, obviously. Is there anyone who has dealt with this in its extreme form? Are there any specialists in the general Oregon area that might be able to help? Just plain HELP! I can't stand watching her diet get so restricted and her go through contaminations. She gives labels a closer scrutinizing than the CIA or FBI would!


So, you're saying that even the packaged foods that say 'gluten free' and don't have fructose listed as an ingredient are sometimes contaminated with those substances?

I would stay away from everything packaged. Often in a factory there are other processed foods that do contain those substances in them.

No packages at all. Buy meat and produce and see if that helps. Try that for several weeks. Then maybe add in one more thing at a time and develop a list of 'safe' items she can eat.

My son has celiac disease....i am aware of the challenges with the cross-contamination.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

smuff
New Member


Date Joined Nov 2017
Total Posts : 8
   Posted 11/11/2017 12:32 PM (GMT -7)   
Daughter has had times she's done antibiotics, but doctors get a bit testy when she specifies which particular one she can take. She's definitely learned to be her own advocate.

Wish there was a multi-vitamin she could take, but between her two food issues, we haven't been able to find one yet.

Celiac reactions are much more benign than fructose. With celiac, she gets real muzzy-headed and tired. Can morph into stomach pain if she doesn't catch it soon, like if she's made no change in her diet yet gets contaminated. . . like when the manufacturer of her "safe" bread changes one bit of their recipe. Grrr . . .

Fructose is horrible. Just the slightest bit and she's got horrible stomach pains, non-stop diarrhea, even vomiting. This lasts for well over a week, then calms to "only" feeling like she has the flu for another week or so.

Daughter is adopted and, as far as we've been able to trace, there is no history of any of this in either side of her birth families. I've heard that some researchers are thinking there might be a link between the celiac/fructose issues and childhood immunizations. Unfortunately, I've also learned to take anything I read/learn worth a grain of salt. These food issues don't seem to follow any pattern from person to person. My brother-in-law is celiac, and he's able to eat things my daughter has never be able to.

smuff
New Member


Date Joined Nov 2017
Total Posts : 8
   Posted 11/11/2017 12:46 PM (GMT -7)   
Daughter is now back to a very restricted diet of three items. She was so happy when she found the bread that she was able to tolerate. One not-from-scratch item! We always sort of laugh when a restaurant advertises gluten free items on their menu. Not taking that chance. There is exactly one restaurant we've found that is willing to cook for Brenda, and they have never once contaminated her, but the manager's daughter has food issues, so he's extra vigilant and willing to work with us. Brenda is so sensitive, her grandchildren even know not to give her kisses anywhere on her face. Been there, done that, been contaminated. I simply can't imagine living without any fruit or veggies like Brenda has to.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 27139
   Posted 11/11/2017 1:13 PM (GMT -7)   
My son never had any immediate reactions when he ingested gluten...and that's not necessarily a good thing.

Because of this, he gets slack - especially at restaurants. He will order a dessert off the menu that has a graham cracker crust...and then eat the top of the desert.
One time, he ordered a Ceasar salad and requested 'no croutons'. It came with the croutons anyway...and he just picked them off.
He wouldn't want to make a 'fuss' and ask for another one to be made.

He lives on his own...nothing I can do about it now.

If he got a bad stomach ache - it would most likely deter him from being so slack about it.

He does get routine blood work - to check the gluten antibodies and also his ferretin levels. (at least!)
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 27139
   Posted 11/11/2017 1:14 PM (GMT -7)   
smuff said...
Daughter is now back to a very restricted diet of three items. She was so happy when she found the bread that she was able to tolerate. One not-from-scratch item! We always sort of laugh when a restaurant advertises gluten free items on their menu. Not taking that chance. There is exactly one restaurant we've found that is willing to cook for Brenda, and they have never once contaminated her, but the manager's daughter has food issues, so he's extra vigilant and willing to work with us. Brenda is so sensitive, her grandchildren even know not to give her kisses anywhere on her face. Been there, done that, been contaminated. I simply can't imagine living without any fruit or veggies like Brenda has to.


I can't imagine - three items.... and no fruit!!!
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Pirouette
Veteran Member


Date Joined Mar 2014
Total Posts : 6046
   Posted 11/11/2017 4:04 PM (GMT -7)   
Multivitamins are generally packed with the cheapest ingredients and fillers so they're best avoided. Better to get single-source vitamins.

Most people with GI issues, sx, all these "boutique" diagnoses that often have the same cause, and GI damage and food issues - are not experiencing these problems because of genes. There are so many causes from modern life, it's not at all surprising that most people are ill.

In some ways, that's good because for most people because they CAN heal their GI.

-p
LYME FORUM MODERATOR

Chronic late-stage lyme—likely infected in '98; Clinically dx Mar'14 w/ Babs, Fry Labs+ Bart-like, CDC+ Bb. First treated 4-5 viruses, GI/immune. Herbal antimicrobials in May; IV port-started Rocephin in Nov; added vancomycin Mar'16;
DETOX: Pinella/Burbur/Parsley/Milk thistle/Burdock/Red root; Samento/Banderol/Enula; JK/Turmeric; BFM-1; antifung; many supps; cholestyramine

astroman
Veteran Member


Date Joined Mar 2014
Total Posts : 3826
   Posted 11/11/2017 5:35 PM (GMT -7)   
smuff - you might want to contact this company.

www.pureencapsulations.com/


I use their PureGenomics Multivitamin. Surprisingly its only $15 a month, about $30 on Amazon for 60count.

www.pureencapsulations.com/media/PureGenomics_Multi.pdf

hypoallergeni, G/F, no artificial sweeteners

it has corn dextrose fermentation and explains the sugar is removed and verified/tested for none, but not the corn:

/www.pureencapsulations.com/customer-service/faqs Scroll down to "Do your products contain corn"

So............this might work for her.

Post Edited (astroman) : 11/11/2017 5:44:57 PM (GMT-7)


smuff
New Member


Date Joined Nov 2017
Total Posts : 8
   Posted 11/11/2017 6:42 PM (GMT -7)   
Thanks, astroman. I'll go do some research this evening. Every little bit of information definitely helps.
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